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Wednesday, October 9

Macular Degeneration & Me

Thursday 08 October 2015 isWorld Sight Day. WSD is a global event that focuses on bringing
attention to blindness and visual impairment. It’s observed on the second
Thursday of October each year. I don't need a WSD to remind me of the
preciousness of my sight. This is my story of sight loss. And don't be like me:
if you think something's not right, go get it checked. Okay?So, here's what happened with Macular Degeneration
& Me...

“Isn’t that rainbow gorgeous?” Loading her shopping in the
car next to mine in an Oldham car park, a woman points towards the high moors.
Trouble is, she’s pointing to what I am getting used to calling my blind side.
Out of politeness I glance around, smile and nod.

She drives away and I test out the rainbow with each eye in
turn. My right sees a picture book arc across wet hills; my left a nightmarish
smear of jumbled greys. It is Maundy Thursday 2005. I have ‘Wet’ Macular
Degeneration in this eye. Shorthand in the media for this condition is usually
AMD, with the A standing for Age Related. 40% of sufferers are over
seventy-five. Not in my case. I’m thirty-nine years old. I’m going blind
because I have very short sight.

Rewind to October 2004. The trip of a lifetime to Disneyland
is planned for my husband and I, and our five-year-old daughter. We are due to
fly out on a Thursday. Work has been hugely pressurised. I’m exhausted, really
need this holiday. I wake late on the Saturday before. In the bathroom, still
in the pre-contacts fuzz of the severely myopic, I notice a strange dark patch
in the upper right quadrant of my vision. It stays there too long after a
blink. It’s like the flashes you see after looking into bright light. But those
are reddish and fade. The dark patch stays there, no matter how hard I blink.

Conscious of a long haul flight in a matter of days, I go to see a local chain
opticians to have it checked. The young woman says all is fine, nothing
untoward. I leave relieved. I’m just tired. Asked to check some small print
figures on a work computer, I find I can’t read them. I must get my contacts
checked. Work colleagues faces look a bit strange, as if their right hand
features are exaggerated. I’m just tired.

The Mouse and
friends live up to expectations. But I’m frantic. The patch seems to have got
bigger. When I go to wind down the window of the hire car, the smooth line of
the top of the glass seems wavy. I touch it. It’s perfectly straight. On day
four, I get up and walk to the kiosk to buy some juice. Through my right eye,
the huge palm trees are straight. Through the left, the trunks squiggle in
exaggerated curves. Time to tell my husband. As daughter plays around life size
Toy Story soldiers, I blurt out what’s happened.

The local
hospital is in the Disney Town of Celebration, USA, even more surreal than the
theme park. I go to ER (carpets, plants, empty of patients), then to a
consultant ophthalmologist (carpets, plants, waiting man in Stetson who offers
a game of cards). The consultant examines me, declares he probably knows what
it is, tells me to see someone as an emergency when I get back to the UK.

One ruined
holiday later, my GP sees me immediately and I am referred to a local eye
clinic the same day. They haven’t the equipment to do a full scan so they do a
quick exam and make a scan appointment for a couple of weeks’ time at the
Manchester Royal Eye Hospital. Returning home, my left eye can no longer see
from 12 to 2 on my kitchen clock. It’s a grey patch.

Appointment at
the Royal. Fiercely stinging eye drops and injections of fluorescent yellow dye
so they can take pictures of my retinas. The nurses are supportive, the
technician doing the scan is very thorough. I ask him what he’s seen. He says something
can be done, but it must be quick. His report back to the local hospital in
Bury will be marked urgent. I am to call Bury in a week. Meanwhile, I pee
yellow marker pen for forty-eight hours.

I call Bury. The
secretary is sniffy. Nothing urgent about what’s come back. I can wait till
December. I wait. More of clock face disappears. Horribly, what I can see of
human faces starts to distort. People turn into fairground mirrors, into
caricatures with features stretched and twisted.

December appointment
at Bury. I am rigid with hope. The middle-aged, arrogant, slightly grubby SHO
produces a model of an eye. He explains to me that the eye is a like a jelly
and it shrinks as we get older. This is causing my sight loss. There is nothing
they can do. Just hope it doesn’t spread to the other eye. Behind him is a
twelve-step poster on how to administer bad news. The December afternoon is
black with rain. I phone my husband to come and take me home. I’m crying so
hard he can’t make out a word.

That evening, I
watch my six-year-old daughter as she drinks her supper milk. My right eye sees her soft
curls, the perfect peach of her cheeks. She looks up at me with her smile that
makes my heart surge. I try with the left. I can only glimpse her at the edges
of my vision. I can no longer see her face.

February 2005. A
work colleague inquires how I am. I tell him. His response is immediate: get my
care transferred to the Royal. If anyone can help, they can. I contact my GP.
He listens, as ever, and says he will do what he can.

After I’ve gone,
he picks up the phone to the Royal and tracks down the technician who did my
scan. The technician explains my condition can be treated but urgency is
greater then ever. Brief hiccup while referral gets lost. GP persists with
another.

I receive an
urgent call from the Royal. Come next week. I do. I am tested by the
optometrist. I have lost the last five rows of his chart in my left eye. More
drops and yellow dye, more scans. The consultant ophthalmologist confirms I have
‘Wet’ Macular Degeneration. It is caused by the growth of abnormal blood
vessels in the retina which can leak and lead to scarring and loss of central
vision. The scan shows the back of my
eye as huge red planet, with the leak a tiny white space ship slap bang on the
macula. He says he will try Photo Dynamic Therapy, a type of cold laser that
works with a dye (Visudyne) to eliminate the new blood vessel. They can
probably halt the progress of the sight loss, but not improve it. I ask if I
should avoid any risk of pregnancy with such chemicals. He looks startled. To
be fair, a nurse had told me the average age in the clinic is seventy-eight.

Monday of Easter
week, day of the treatment. I am weighed and measured so they can calculate the
correct amount of Visudyne. I am hooked up to the computer that will administer
it. My nurse stays with me, a gentle hand rubbing my shoulder as the blue
liquid enters my veins. An alarm link tells the consultant exactly when I must
have the laser. It is administered for precisely fifty seconds. I leave the
clinic covered from head to foot, including hat and gloves. I cannot be in
direct daylight for forty-eight hours as it would trigger a reaction with the
dye that would burn my skin. By night two, I am utterly fed up and have several
large glasses of wine. My liver is already dealing with Visudyne. I have the
worst hangover of my life the next day.

I return to work
to lots of vampire jokes, relieved to only have two days of work before the
Easter break. Shopping at Sainsbury’s, I’m asked to look at that rainbow. I
wish.

Easter Saturday
morning, I go to write a note on the wall planner. Hang on. I can see the tip
of the pencil on the paper. With my left eye. It’s cloudy, but it’s there. I
drive to the shops. Telegraph poles are straightening. Still curvy, but no more
zigzags.

It clears. It all
clears over the next couple of weeks. Faces come back. Proper, real, faces. No
fairground mirrors. In June, I return to the Royal for the next set of
treatment. The cheery optometrist goes to assess my sight. I tell him it’s
better. He nods, but I can tell he doesn’t believe me. Then tests. I get a
‘gosh’. I’ve regained all five lost lines of the chart. My left eye is now
better than my right. The Royal have done it. They fixed me.

~~~~~~~~~~~~~~~~~~~

Postscript, October
2015

PDT has since been taken over by more effective treatments.
In 2005, it was the best chance. A very special hospital full of experts gave
me the best they had, and it worked. Ten years on, I can see my daughter’s face,
my husband’s. I’ve been able to carry on writing, reading, driving, seeing the
most amazing parts of the world. Living. And living to the best quality of
life, not condemned to a preventable disability. The only reminders are a very
slight wave on straight lines and a twice-weekly check by looking at an Amsler
Grid.

Yes, I got lucky. But I also got the right treatment. Your
eyes are precious. If something isn’t looking right, get it checked. Okay?

Thanks for your lovely comments, Andrea. I'm so sorry to hear you have problems and it is very frightening. One thing we can hold on to is that there are enormous advances all the time. If I had had MD even 15 years ago it would have been a different story. I hope you can be free of your worries, too. Take care. x

Sir Benedict Palmer returns to Germany on November 1 2016!

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About Me

E.M. Powell’s medieval thrillers THE FIFTH KNIGHT and THE BLOOD OF THE FIFTH KNIGHT have been #1 Amazon bestsellers and a Bild bestseller in Germany. Book #3 in the series, THE LORD OF IRELAND, was published by Thomas & Mercer on April 5 2016. Born and raised in the Republic of Ireland into the family of Michael Collins (the legendary revolutionary and founder of the Irish Free State), she now lives in northwest England with her husband, daughter and a Facebook-friendly dog. She is also a contributing editor to International Thriller Writers The Big Thrill magazine, blogs for English Historical Fiction Authors, reviews fiction & non-fiction for the Historical Novel Society and is part of the HNS Social Media Team. Find out more by visiting www.empowell.com.